Browsing by Subject "Self-care"

Now showing 1 - 8 of 8
  • Thumbnail Image
    Item
    A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes
    (Frontiers Media, 2024-01-03) Schubart, Jane R.; Mills, Susan E.; Francomano, Clair A.; Stuckey-Peyrot, Heather; Medical and Molecular Genetics, School of Medicine
    Introduction: Individuals with Ehlers-Danlos syndromes (EDS) often have complex and multi-faceted symptoms across the lifespan. Pain and the related symptoms of fatigue and sleep disorders are common. The objective of this qualitative study was to understand how participants manage their pain and related symptoms. Methods: The design was a qualitative thematic content analysis. Twenty-eight interviews were conducted to collect data from individuals who were participants in a prior quantitative longitudinal study. A semi-structured interview guide was designed to focus on and understand the trajectory of pain, sleep, fatigue, and general function. The interview continued with questions about coping mechanisms and obstacles to maintaining a sense of well-being. Results: Symptoms reported by participants were widespread and often interwoven. Pain was universal and often resulted in fatigue and disordered sleep which impacted physical function. Most participants reported that their symptoms worsened over time. Participants reported a wide range of effective interventions and most reported developing self-care strategies to adapt to their disabilities/limitations. Solutions included complementary interventions discovered when conventional medicine was unsuccessful. Very few relied on a "system" of health care and instead developed their own strategies to adapt to their disabilities/limitations. Discussion: EDS symptoms are often debilitating, and their progression is unknown. For most participants, symptoms worsened over the time. Even though participants in our study, by experience, were self-reliant, the importance of knowledgeable medical providers to help guide self-care should be emphasized.
  • Thumbnail Image
    Item
    Diabetes-related quality of life and the demands and burdens of diabetes care among emerging adults with type 1 diabetes in the year after high school graduation
    (Wiley Online Library, 2014-10) Hanna, Kathleen M.; Weaver, Michael T.; Fortenberry, J. Dennis; DiMeglio, Linda A.; Department of Biostatistics, School of Public Health
    The roles of glycemic control, diabetes management, diabetes care responsibility, living independently of parents, and time since high school graduation in predicting diabetes-related quality of life (DQOL) were examined in 184 emerging adults with type 1 diabetes. Data were collected at graduation and 1 year later. Analyses controlling for selected covariates were completed using generalized linear mixed models. Better diabetes management was associated with more positive responses on all four dimensions of DQOL. Impact and worry of DQOL were greater in the presence of depressive symptoms, and life satisfaction was lower. DQOL life satisfaction was lower in those living independently of parents. Young women reported poorer diabetes-related health status than did young men. Time since graduation was not linked to DQOL. Further research is needed on ways to improve DQOL in conjunction with diabetes management and on ways that families can support DQOL when youth live independently.
  • Thumbnail Image
    Item
    Macroergonomic factors in the patient work system: examining the context of patients with chronic illness
    (Taylor & Francis, 2017-01) Holden, Richard J.; Valdez, Rupa S.; Schubert, Christiane C.; Thompson, Morgan J.; Hundt, Ann S.; BioHealth Informatics, School of Informatics and Computing
    Human factors/ergonomics recognises work as embedded in and shaped by levels of social, physical and organisational context. This study investigates the contextual or macroergonomic factors present in the health-related work performed by patients. We performed a secondary content analysis of findings from three studies of the work of chronically ill patients and their informal caregivers. Our resulting consolidated macroergonomic patient work system model identified 17 factors across physical, social and organisational domains and household and community levels. These factors are illustrated with examples from the three studies and discussed as having positive, negative or varying effects on health and health behaviour. We present three brief case studies to illustrate how macroergonomic factors combine across domains and levels to shape performance in expected and unexpected ways. Findings demonstrate not only the importance of context for patients' health-related activities but also specific factors to consider in future research, design and policy efforts. Practitioner Summary: Health-related activities of patients are embedded in and shaped by levels of social, physical and organisational context. This paper combined findings from three studies to specify 17 contextual or macroergonomic factors in home- and community-based work systems of chronically ill patients. These factors have research, design and policy implications.
  • Thumbnail Image
    Item
    Medication management strategies used by older adults with heart failure: A systems-based analysis
    (Oxford Academic, 2018-06) Mickelson, Robin S.; Holden, Richard J.; BioHealth Informatics, School of Informatics and Computing
    Background: Older adults with heart failure use strategies to cope with the constraining barriers impeding medication management. Strategies are behavioral adaptations that allow goal achievement despite these constraining conditions. When strategies do not exist, are ineffective or maladaptive, medication performance and health outcomes are at risk. While constraints to medication adherence are described in literature, strategies used by patients to manage medications are less well-described or understood. Aim: Guided by cognitive engineering concepts, the aim of this study was to describe and analyze the strategies used by older adults with heart failure to achieve their medication management goals. Methods: This mixed methods study employed an empirical strategies analysis method to elicit medication management strategies used by older adults with heart failure. Observation and interview data collected from 61 older adults with heart failure and 31 caregivers were analyzed using qualitative content analysis to derive categories, patterns and themes within and across cases. Results: Data derived thematic sub-categories described planned and ad hoc methods of strategic adaptations. Stable strategies proactively adjusted the medication management process, environment, or the patients themselves. Patients applied situational strategies (planned or ad hoc) to irregular or unexpected situations. Medication non-adherence was a strategy employed when life goals conflicted with medication adherence. The health system was a source of constraints without providing commensurate strategies. Conclusions: Patients strived to control their medication system and achieve goals using adaptive strategies. Future patient self-mangement research can benefit from methods and theories used to study professional work, such as strategies analysis.
  • Thumbnail Image
    Item
    Patient-centered mobile health technology intervention to improve self-care in patients with chronic heart failure: Protocol for a feasibility randomized controlled trial
    (Elsevier, 2021) Kitsiou, Spyros; Gerber, Ben S.; Kansal, Mayank M.; Buchholz, Susan W.; Chen, Jinsong; Ruppar, Todd; Arrington, Jasmine; Owoyemi, Ayomide; Leigh, Jonathan; Pressler, Susan J.; School of Nursing
    This randomized controlled trial aims to determine the feasibility and preliminary efficacy of a patient-centered, mobile health technology intervention (iCardia4HF) in patients with chronic Heart Failure (HF). Participants (n = 92) are recruited and randomized 1:1 to the intervention or control group. The intervention group receives a commercial HF self-care app (Heart Failure Storylines), three connected health devices that interface with the app (Withings weight scale and blood pressure monitor, and Fitbit activity tracker), and a program of individually tailored text-messages targeting health beliefs, self-care self-efficacy, HF-knowledge, and physical activity. The control group receives the same connected health devices, but without the HF self-care app and text messages. Follow-up assessments occur at 30 days and 12 weeks. The main outcome of interest is adherence to HF self-care assessed objectively through time-stamped data from the electronic devices and also via patient self-reports. Primary measures of HF self-care include medication adherence and adherence to daily weight monitoring. Secondary measures of HF self-care include adherence to daily self-monitoring of HF symptoms and blood pressure, adherence to low-sodium diet, and engagement in physical activity. Self-reported HF self-care and health-related quality of life are assessed with the Self-care Heart Failure Index and the Kansas City Cardiomyopathy Questionnaire, respectively. Hospitalizations and emergency room visits are tracked in both groups over 12 weeks as part of our safety protocol. This study represents an important step in testing a scalable mHealth solution that has the potential to bring about a new paradigm in self-management of HF.
  • Thumbnail Image
    Item
    Performance-Shaping Factors Affecting Older Adults' Hospital-to-Home Transition Success: A Systems Approach
    (Oxford Academic, 2019-04) Werner, Nicole E.; Tong, Michelle; Borkenhagen, Amy; Holden, Richard J.; Health Policy and Management, School of Public Health
    Background and Objectives Facilitating older adults’ successful hospital-to-home transitions remains a persistent challenge. To address this challenge, we applied a systems lens to identify and understand the performance-shaping factors (PSFs) related older adults’ hospital-to-home transition success. Research Design and Methods This study was a secondary analysis of semi-structured interviews from older adults (N = 31) recently discharged from a hospital and their informal caregivers (N = 13). We used a Human Factors Engineering approach to guide qualitative thematic analysis to develop four themes concerning the system conditions shaping hospital-to-home transition success. Results The four themes concerning PSFs were: (a) the hospital-to-home transition was a complex multiphase process—the process unfolded over several months and required substantial, persistent investment/effort; (b) there were unmet needs for specialized tools—information and resources provided at hospital discharge were not aligned with requirements for transition success; (c) alignment of self-care routines with transition needs—pre-hospitalization routines could be supportive/disruptive and could deteriorate/be re-established; and (d) changing levels of work demand and capacity during the transition—demand often exceeded capacity leading to work overload. Discussion and Implications Our findings highlight that the transition is not an episodic event, but rather a longitudinal process extending beyond the days just after hospital discharge. Transition interventions to improve older adults’ hospital-to-home transitions need to account for this complex multiphase process. Future interventions must be developed to support older adults and informal caregivers in navigating the establishment and re-establishment of routines and managing work demands and capacity during the transition process.
  • Thumbnail Image
    Item
    Rewiring Anxiety by Using Movement to Promote Self-Care: An Action Research Self-Study
    (2020) Armstrong, Ilene; Leigh, Heather
    This paper summarizes this beginning art therapist's master's level capstone project. My project began in Fall 2019 as I was experiencing increased stress, anxiety, and perfectionism in my clinical internship, which was influencing how I responded to people both personally and professionally. I have autism and have often referred to myself as a recovering perfectionist, both of which are factors that have affected specifically my anxiety and interactions. I wanted to find more effective coping strategies. In Spring 2020, I conducted an action research self-study to explore the therapeutic effects of movement to reduce my unhealthy stress, anxiety, and perfectionism. Action research encourages practitioners of any vocation to learn by "doing" in order to change or improve their practice, their understanding of it, and the environments in which they work. This study empowered me to realize how familiar movements can both reduce and rewire my unhealthy stress, anxiety, and perfectionism. It has also helped me to improve my practice and step confidently into art therapy as an increasingly independent clinician. A major outcome of this project that could help others was discovering the importance of self-care and self-compassion in the process of becoming an art therapist.
  • Thumbnail Image
    Item
    Visual Reflective Journaling for Graduate Art Therapy Students
    (2019) Scott, Jenna; Leigh, Heather
    This qualitative, art-based, single subject study explored the lived experience of graduate art therapy student’s experiences with a visual reflective journaling process. The study was conducted over the course of six weeks through a three-part process: journaling, art making, and reflection writing. At the end of the single subject study, the individual and two additional reviewers completed a thematic analysis of each individual part of the journaling process generating codes and themes. The findings indicated that visual reflective journaling can be helpful in reducing stress, improving coping skills, and creating distance, allowing the individual to see the bigger picture and shifting perspectives.